Medication

What medication and how much are those of you with TN 2 taking?

1200 mg oxcarbazepine and 300 mg baclofen finally got a little relief but still have breakthrough every few weeks for one night.

I have tried those but don't think they worked. Is your pain burning and aching? I have had this off and on for 12 years. Getting tired of circling through all these meds.

I'm on 600 MG gabapentin and 50 MG nortriptyline. I noticed the decrease in my pain level when the nortriptyline was added to the gabapentin. I've been on various meds and at much higher levels than what I'm on now, and I get intense flare-ups about once a month regardless.

I have bilateral ATN, with both burning boring pain of TN2, and the striking pain of TN1. Before surgeries, I was taking 2400 mg of Gabapentin per day. While it never completely relieved the pain, it made it tolerable.

I have ATN (TN2) with mostly aching and crushing feelings. With out medication these feelings have been continuous for 10 months now.

Fails for me that might work for you: I tried gabapentin and it resulted in swelling and memory loss be fore I could get on a dose that worked.

I next tried Lyrica, it was expensive but worked wonders for my pain, I felt almost pain free with in 3 days of my starting dose, sadly, after 6 weeks the drug pushed me from light depression into a deep suicidal funk, which i found very strange because now that i didn't hurt why did I want to die? It was a common side effect but still took time for me to recognize it, If you go on this very expensive drug ($100 a month after my insurance) I recommend warning someone close to you to watch for depressive behavior, because it was very hard to see in yourself.

Useful doses of Oxcarbamazepine did not work out for me. I was taking 300mg, and then 600mg but at 300 I was dizzy all the time and at 600 I was nauseous and could not stand due to dizziness so I dropped down.

What I am on now: 150mg of Oxcarbamazepine, a very low dose which barely takes the edge off the pain. in addition I take 40mg of fluoxetine (morning), and 50mg of nortriptyline (night). All together I feel the pain daily but it is more background levels most the time.

Good luck!

Ok I have tried trileptal... maybe I need to get back on it. I have been on lyrica and it does work well. I think all these drugs affect your memory. It's scary.... I have been taking all these drugs since 2003. I wonder why I can't remember names...lol

I have basically given up on my memory, between drugs and generally only sleeping about 4-5 hours a night for months I forget names, faces, words like "fork" and "computer". I don't say "please pass the...whatever" any more I say, "could you...Um." gesture at something and look concerned as I search my mind for the word. Usually my family and friends can figure it out. But I pity the store clerks and strangers I have to interact with, they are very confused. :)

Yeah... my memory is shot too. I know its because of the drugs. What I really wonder is if I go off the drugs, would my memory come back??

Amitriptyline and Nortriptyline have been my life savers. I have been on as low as 10mgs and as high as 75 mgs on both. Not at the same time. I found the side effects of Nortrip are better but on a higher dose it makes me really anxious

Since the first twinge of pain I was put on medications. First was carbamazepine & morphine. Now I am on 6 different medications and still suffer with breakthrough and side effects. Carbamazepine 200 mg 2 pills twice a day, Baclofen 10mg 4 times a day, Valium 5mg 3 times a day, oxymorphone IR 10mg every 4 hours as awake, Opana ER 5 mg 3 times a day, Nortriptyline 50mg @ bedtime, and the newest is SubSys 600mcg every 4 hours. I am also on anti-vomiting meds every 6 hours. I have lost almost 90 lbs since onset of symptoms in Novemeber 2013. I still continue to loose anywhere between 5 and 12 lbs every month, it’s worse when meds are upped or changed or lowered and new ones added. I was overweight to begin with so its not like I didn’t need to loose the weight it’s just the way and amount that is alarming to me & the doctor doesn’t seem worried (yet). He said if we can’t get it under control soon he might attempt a full detox, in the hospital, and probably have me sedated for most of the time and see if I reset? And then start from scratch all over.
I recently had a cheek swab sent off for DNA analysis for what meds are and aren’t effective and the results were shocking to me. I should not be on morphine as it has no effect on my body, Dialudid & Methadone can kill me, and the “lighter”(as doc called them) pain meds like Percocet & loratab were ok for me but had no long term usage advised. So, that’s me!

I do the same thing for a week I called soccer, basketball. I called the fridge a closet for about a month. Some days I can’t remember my own name let alone what, if anything, needs to be done. Thankfully I have my sister, bil, & niece, to make sure I eat, drink, take meds, go to docs and many other tasks.




itwouldntbemakebelieve said:

I have basically given up on my memory, between drugs and generally only sleeping about 4-5 hours a night for months I forget names, faces, words like “fork” and “computer”. I don’t say “please pass the…whatever” any more I say, “could you…Um.” gesture at something and look concerned as I search my mind for the word. Usually my family and friends can figure it out. But I pity the store clerks and strangers I have to interact with, they are very confused. :slight_smile:

I wanted to add I have both TN 1 & 2, with occipital & cranial neuralgia; all started after an operation C1 & C2 laminectomy without fusion.




PittsFan said:

Since the first twinge of pain I was put on medications. First was carbamazepine & morphine. Now I am on 6 different medications and still suffer with breakthrough and side effects. Carbamazepine 200 mg 2 pills twice a day, Baclofen 10mg 4 times a day, Valium 5mg 3 times a day, oxymorphone IR 10mg every 4 hours as awake, Opana ER 5 mg 3 times a day, Nortriptyline 50mg @ bedtime, and the newest is SubSys 600mcg every 4 hours. I am also on anti-vomiting meds every 6 hours. I have lost almost 90 lbs since onset of symptoms in Novemeber 2013. I still continue to loose anywhere between 5 and 12 lbs every month, it’s worse when meds are upped or changed or lowered and new ones added. I was overweight to begin with so its not like I didn’t need to loose the weight it’s just the way and amount that is alarming to me & the doctor doesn’t seem worried (yet). He said if we can’t get it under control soon he might attempt a full detox, in the hospital, and probably have me sedated for most of the time and see if I reset? And then start from scratch all over.
I recently had a cheek swab sent off for DNA analysis for what meds are and aren’t effective and the results were shocking to me. I should not be on morphine as it has no effect on my body, Dialudid & Methadone can kill me, and the “lighter”(as doc called them) pain meds like Percocet & loratab were ok for me but had no long term usage advised. So, that’s me!

I'm on 600 mg of Neurontin, but I also want to put in a plug for VIMPAT, which most of my doctors have never heard of. As I said in another thread, Vimpat is the only med that has been able to stop my TN1 pain in its tracks. It works within minutes, and the pain stops immediately.

The main problem is that it loses its effectiveness very quickly. The first time I took it, I had no pain for an hour. In the next few weeks, it only worked for 30 minutes, etc. Eventually, the dosage was so high, and the breakthrough pain so frequent, that I got a radiofrequency rhizotomy. However, when I have breakthrough pain post-surgery, I still take 100mg on an as-needed basis, especially when I'm about to teach a class, give a lecture, etc. It's a fantastic bandage for me.

The only side effect I experience is deep drowsiness during long commutes. It worked miracles for me, and I hope it works for someone else out there.

I'm on 600 mg (times 3) of gabepentin, baclofen & klonapin at night, ibuprofen, tramadol and vicodin as needed. I wear ice almost all the time now. Lyrica gave me a severe drug rash. Tegretol made me suicidal. I've tried capsaicin, lidocaine patches, oragel in my ear and along my tonsil, and up my nose. I've worn an ear plug up my nose and have hidden as much of my face as possible behind a scarf. I'm ready to get a niqab for when the cold weather sets in.

Wish me luck on the 21st ... it's when I meet with a neurosurgeon at Johns Hopkins to see if I can get into a clinical trial for motor cortex stimulation. I'm tired of this medicine and pain merry go round.